Archive for the ‘Press Releases’ Category

For Immediate Release:  Alex Lee, alee@globaldownsyndrome.org, D: (720) 548-5631

 The Agency for Healthcare Research and Quality Systemic Review Publication Paves the Way for the GLOBAL Medical Care Guidelines for Adults with Down Syndrome 2^nd Edition

DENVER, CO – March 20, 2026 – The Global Down Syndrome Foundation (GLOBAL) is proud to announce that the Agency for Healthcare Research and Quality (AHRQ) systemic review of the new edition of the GLOBAL Medical Care Guidelines for Adults with Down Syndrome (GLOBAL Adult Guideline) has been published today in the prestigious Effective Health Care (EHC) Database.

This is an important milestone in the 5-to-7-year rigorous development process required to publish professional, evidence-based medical guidelines. The ECH publication includes updated findings on prevalence and treatment for common co-occurring conditions  and paves the way for the Second Edition of the GLOBAL Adult Guideline, which should be finalized by the end of 2026 or early 2027. The new edition updates and expands the first edition, which was published in JAMA in 2020 and established the first evidence-based standards for the adult Down syndrome community. The JAMA publication was one of the most visited medical recommendation pages on the JAMA website and to date has been professionally referenced over 200 times.

“To be able to announce this in time for World Down Syndrome Day is particularly meaningful, said GLOBAL Vice President of Research and Medical Care Bryn Gelaro. “This publication, led by PICORI and AHRQ, is a powerful validation of the rigor we bring to Down syndrome research and medical care. By vetting clinical expertise against hard evidence, we are finally providing a reliable resource for medical professionals to ensure adults with Down syndrome receive the specialized, high-quality care they deserve.” 

In 2023, GLOBAL was awarded a competitive grant from the Patient-Centered Outcomes Research Institute (PCORI). This grant funded a milestone systematic review designed to answer the GLOBAL Adult Guideline authors’ critical health questions and synthesize clinical expertise and research evidence. To ensure the highest level of objectivity, the AHRQ—the federal agency tasked with improving the safety and quality of America’s healthcare system—was commissioned to lead the comprehensive review of the literature.

The quality of the AHRQ review manuscript earned immediate publication in the EHC Database. In addition, the publication was acknowledged as a vital contribution to national health standards by the Director of AHRQ at the U.S. Department of Health and Human Services (HHS), Roger D. Klein, MD, JD.

“The GLOBAL Adult Guideline is important to my life,” says 2026 GLOBAL Ambassador Letizia Napoleone. “When I go to the doctor, I want to get better! They need to know about Down syndrome. I am proud to be part of GLOBAL who is helping doctors understand how to support people with Down syndrome to have healthy long lives.”

“We are deeply grateful to donors – including Key Collaborators and GLOBAL Member Organizations who understand the importance of this resource and have committed funds in support updates and the addition of important new medical cares,” says GLOBAL President & CEO Michelle Sie Whitten. It is also a testament to Bryn Gelaro and David Tolleson who have worked so diligently to ensure that the Guideline Workgroup can continue the complex task of rigorous review, excellent writing, and publication. As a mom to Sophia, it is wonderful to know that she will get infinitely better care in her old age because of this resource.”

The AHRQ systematic review will directly inform the 2^nd Edition GLOBAL Adult Guidelines. While the first edition addressed nine critical areas— Behavior, Alzheimer’s/Dementia, Diabetes, Cardiovascular disease, Obesity, Osteoporosis, Atlantoaxial Instability, Thyroid Disease, and Celiac Disease, and Thyroid Disorders—the new edition will build on that foundation to include five additional topics:

• Blood Cancers
• Solid Tumor (Cancers)
• Sleep Apnea
• Eye and Vision
• Musculoskeletal

“I remember wishing that this resource was available to my parents and brother, Jack, after David Tolleson introduced me to GLOBAL and the adult guidelines,” says Shawna Lucas, long-time GLOBAL supporter and former marketing executive. “Seeing this work recognized at the federal level gives us hope that every family will have access to the lifesaving information they need as their loved ones with Down syndrome age. This is a great way to honor Jack and to pay it forward to millions of adults with Down syndrome who deserve to grow old with a shot at good health and dignity.”

“Our family is honored to support the GLOBAL Medical Care Guidelines for Adults with Down Syndrome,” says Michele Ritter, a long-time GLOBAL supporter. “Having lost my beautiful sister Lorraine to Alzheimer’s, we know firsthand the gaps in medical care for adults with Down syndrome. We are proud and excited to support the 2nd edition and to see the impact these guidelines will have on the health and longevity of our loved ones around the world.”

Fifty-four GLOBAL Member Organizations have supported the 2^nd Edition GLOBAL Adult Guideline. One of the largest multi-year donors, the Down Syndrome Alliance of the Midlands (DSA), based in Omaha, Nebraska, is grateful for GLOBAL’s efforts to establish this first-in-kind resource.

“For our families in the Midlands, these guidelines are more than just research—they are a lifeline,” said DSA Executive Director Elizabeth Draney. “It is great to have federal support but equally important, the GLOBAL Adult Guideline is something that doctors in our community trust and can help ensure our adult with Down syndrome receive the best care possible. We pledged our support for the second edition because investing in the guideline is an investment in the health of every person with Down syndrome.”

In 2018 GLOBAL successfully lobbied and advocated for the first trans-National Institutes of Health Down syndrome funding program called the INCLUDE Project. In the time since the first edition of the GLOBAL Adult Guideline was published, the NIH INCLUDE Project has provided over $440M of funding to Down syndrome research that is contributing to the evidence that is the very foundation of the guidelines. In addition, the INCLUDE Project research is bolstering the evidence that contributes to the GLOBAL Adult Guideline evidenced by the 2^nd Edition having 300% more quality publications to draw from.

List of GLOBAL Adult Guideline Authors: Medical Director at University of Pittsburgh Adult Down Syndrome Center, Peter Bulova (MD), Medical Director of the Down Syndrome Clinic and Research Center at Kennedy Kreiger, George Capone (MD), Medical Director and Co-Founder, Advocate Medical Group Adult Down Syndrome Center in Chicago, Brian Chicoine (MD), Executive Director of the Linda Crnic Institute for Down Syndrome at University of Colorado Anschutz Medical Campus, Aurora, CO Joaquín Espinosa(PhD), Medical Director of Immunogenetics and Transplantation Laboratory at the University of Arkansas for Medical Sciences, Terry Harville (MD), Surgical Director of the Complex Obstructive Sleep Apnea Center at the University of Cincinnati, Christine Heubi (MD), Assistant Professor in the Department of Physical Therapy at the University of Nevada, Thessa Hilgenkamp (PhD), Professor of Ophthalmology at the University of Pittsburgh School of Medicine, Vishal Jhanji (MD), Medical Director, Adult Down Syndrome Clinic at Denver Health, Barry Martin, MD, Chief of Pediatric Ophthalmology at Children’s Hospital Colorado, Emily McCourt (MD), Director of the Down Syndrome Behavioral Health Collaborative, University of Colorado School of Medicine Lina Patel (PsyD), Co-founder of the Adults with Down Syndrome Specialty Clinic at the University of Kansas Medical Center, Moya Peterson (PhD, ARNP), Director of Medical Student Education, University of Colorado Anschutz Medical Campus, Michael Puente Jr (MD), Medical Director of the Alzheimer’s Therapeutic Research Institute and Alzheimer’s Clinical Trials Consortium – Down Syndrome Principal Investigator at Keck School of Medicine of University of Southern California, Michael Rafii (MD, PhD), Professor of Family and Community Medicine at Cleveland Clinic Lerner College of Medicine and Case Western Reserve University School of Medicine Carl Tyler (MD), and Provider at the Down Syndrome Center of Western PA and Medical Director of Street Medicine Pitt at the University of Pittsburgh Medical Center, Anna Marie White (MD).

To learn more about the GLOBAL Medical Care Guidelines for Adults with Down Syndrome visit https://www.globaldownsyndrome.org/medical-care-guidelines-for-adults/.

For World Down Syndrome Day or GLOBAL Adult Guideline media inquiries, photos, and B-roll please contact Alex Lee at pr@globaldownsyndrome.org.

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About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 40 states and 11 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 130 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine 

Down Syndrome World TM. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and

the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media Facebook, X, Instagram, LinkedIn, and YouTube.

We Need Your Help! Contact Your Members of Congress Today

Get Inspired: View all photos

The Global Down Syndrome Foundation (GLOBAL) concluded a highly successful three-day fly-in to Washington, D.C. earlier this month, bringing together 120 dedicated supporters from 22 states and Washington, DC to advocate for congressional passage of the DeOndra Dixon INCLUDE Project Act (H.R. 3491; S.1838).

Throughout the fly-in, GLOBAL advocates met with 87 Members of Congress and their congressional staff. Meetings included key members of the House Appropriations and Energy & Commerce Committees and Senate Appropriations and HELP Committees to directly address the impact of the National Institutes of Health (NIH) Down syndrome research program called the INCLUDE Project.

“People with Down syndrome bring both sides of the aisle together and that is a beautiful thing,” says GLOBAL President and CEO Michelle Sie Whitten. “Our GLOBAL advocates did an amazing job meeting with Members and staff and explaining the importance of the continuation and increased funding for the NIH INCLUDE Project. We could not have come this far without the leadership and dedication of our Congressional and NIH Champions, dedicated scientists and clinicians, and our brilliant self-advocates and family members.” 

Key Highlights of the 2026 GLOBAL DC Fly-In:

• Training: GLOBAL held a training dinner to review the impact of the DeOndra Dixon INCLUDE Project Act and update advocates on how NIH Down syndrome research is already improving the health of individuals with Down syndrome across the country.
  • The bill is named in honor of the life and legacy of DeOndra Dixon, beloved GLOBAL Ambassador and inspiration behind GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award. DeOndra keynoted at conferences around the country and the world and was a fixture at GLOBAL events along with her big brother Jamie Foxx as well as her loving extended family. She was a talented dancer and musician who performed at the 52^nd Grammy Awards.
• Congressional Briefing: GLOBAL organized a Congressional Briefing attracting over 150 attendees featuring keynote speakers Senator John Hickenlooper (D-CO), Director of the NIH Dr. Jay Bhattacharya, GLOBAL International Spokesperson and Grey’s Anatomy Actor Caterina Scorsone, GLOBAL International Spokesperson and Board Member Frank Stephens, Executive Director of the Crnic Institute for Down Syndrome Dr. Joaquin Espinosa, and President & CEO of GLOBAL Michelle Sie Whitten.

• Advocacy & Bipartisan Support: GLOBAL Advocates met with 87 Member Offices including 18 Member level meetings. To date, there are 24 cosponsors of the DeOndra Dixon INCLUDE Project Act.

“What Michelle, her family and the GLOBAL team have done is truly remarkable. They have literally put Down syndrome research on the map, working with self-advocates and Congress to create a Down syndrome research program at NIH that is already improving health outcomes. With leadership from Senators Jerry Moran, Cory Booker and Markwayne Mullin, we need to codify this work through the DeOndra Dixon INCLUDE Project Act. Every time I hear the words DeOndra Dixon, it puts a smile on my face because she was a joyful warrior,” says Senator John Hickenlooper. “The bill that we are working on, the fact that it has her name, gives it a superpower.”

“At the NIH, we have a long-standing commitment for advancing research on Down syndrome,” says Director of the National Institutes of Health and Acting Director of the Centers for Disease Control and Prevention Dr. Jay Bhattacharya during his speech at the Global Down Syndrome Foundation Congressional Briefing. “Between the fiscal year 2011 and fiscal year 2025, the NIH increased investment in Down syndrome research by 500%. This growth reflects scientific opportunity as well as energy, partnership and persistence of GLOBAL and the Down syndrome community. I look forward to a day people with Down syndrome can live longer and healthier lives.”

“As the proud mom of Pippa, who happens to have Down syndrome, it has been deeply rewarding to partner with Michelle and her wonderful team at GLOBAL,” says GLOBAL International Spokesperson and award-winning Grey’s Anatomy actor Caterina Scorsone. “It is exciting to be part of GLOBAL’s advocacy in DC that will no doubt see the DeOndra Dixon INCLUDE Project Act pass so that people with Down syndrome can live longer, healthier lives. The energy and excitement at our Congressional Briefing and the connectivity made at our meetings was truly inspirational.”

GLOBAL Spokesperson and Quincy Jones Advocacy Awardee, Author, Actor and Public Speaker Frank Stephens provide an important self-advocate perspective at the GLOBAL Congressional Briefing, “Not everyone offers love and acceptance to people with an extra chromosome. Millions of people view our extra chromosome as a mistake to be fixed or eliminated. I know I am lucky to be at the helm of this GLOBAL movement, and to live in the US during this moment in history where I am valued and where I get to tell our government that my life is worth living.”

“Formally authorizing the DeOndra Dixon INCLUDE Project Act beyond an annual congressional directive will ensure that people with Down syndrome are not left behind when it comes to participating in clinical trials; it will improve health outcomes and improve their quality of life; and it will send a strong message that our society values and wants to invest in the future of our children and adults with Down syndrome and their families,” says Executive Director of the Crnic Institute for Down Syndrome Dr. Joaquín Espinosa. “What GLOBAL has done here in DC in transformative, lifesaving and has moved Down syndrome from the least funded genetic condition at the NIH to a period of research renaissance.”

The seventeen local Down syndrome organizations who supported the GLOBAL DC Fly-In were pleased with the results and optimistic that the passage of this landmark bill will happen during the 119^th Congress.

“We were so pleased that our Representative Ann Wagner signed up to cosponsor the DeOndra Dixon INCLUDE Project Act on the spot!” says Executive Director of the Gateway Down Syndrome Association Erin Suelmann. “My brother Andrew played a key role in our meetings, and we are hopeful that Senators Josh Hawley and Eric Schmitt will also come on board. We are energized by the momentum GLOBAL has built and look forward to seeing this important legislation pass this year.”

“DSA of Central Oklahoma is a long-time supporter of the Global Down Syndrome Foundation, and their government advocacy work that resulted in the establishment of the trans-NIH Down syndrome research program called the INCLUDE Project,” says Executive Director of the Down Syndrome Association of Central Oklahoma Sarah Soell. “We know first-hand from our families that the increased research funding is making a difference. We see real progress in the treatment of the many co-occurring conditions that we see in people with Down syndrome, including autoimmune conditions, regression disorder, sleep apnea, Alzheimer’s and more. Given the nearly twenty years of Down syndrome being the least funded genetic condition at the NIH prior to the INCLUDE Project, it is so important to pass this bill. We were so pleased that our representative Ephraim Bowling was able to join GLOBAL in meeting with Members of Congress and share his hope for a brighter future for his sister, Joy.”

GLOBAL had advocated for a trans-National Institutes of Health (NIH) Down syndrome research program since its inception in 2009. In 2017, three GLOBAL senior leaders, including board member, Frank Stephens, testified at the landmark House Appropriations Subcommittee on Labor, Health, and Human Services, Education, and Related Agencies Hearing entitled “Down Syndrome: Update on the State of the Science and Potential for Discoveries Across Other Major Diseases.” Frank Stephens’ testimony went viral that evening with 1 million views and today has over 200 million views. Shortly after the hearing, GLOBAL’s long-time advocacy goal was fulfilled, and the NIH established the INCLUDE (Investigation of Co-occurring conditions across the Lifespan to Understand Down syndrome) Project.

Since the INCLUDE Project was established as part of the FY2018 Labor-HHS appropriations bill, the program has funded nearly 500 unique awards from 21 of the 27 NIH institutes. At least eleven of these institutes did not participate in Down syndrome research prior to this program. The INCLUDE Project has also supported the development of the clinical trial infrastructure. Prior to the program, there were only two NIH clinical trials focused on people with Down syndrome. In just seven years, the INCLUDE Project is funding fifteen promising clinical trials with possible immediate or short-term impact for people with Down syndrome.

DeOndra Dixon INCLUDE Project Act Cosponsors (S. 1838; H.R. 3491)

1. Senator John Hickenlooper (D-CO)*
2. Senator Jerry Moran (R-KS)*
3. Senator Cory Booker (D-NJ)
4. Senator Markwayne Mullin (R-OK)
5. Senator Michael Bennet (D-CO)
6. Senator Alex Padilla (D-CA)
7. Senator Shelley Moore Capito (R-WV)
8. Senator Christopher Coon (D-DE)
9. Senator Chris Van Hollen (D-MD)
10. Representative Diana DeGette (D-CO-01)*
11. Representative Richard Hudson (R-NC-09)*
12. Representative Tom Cole (R-OK-04)
13. Representative Rosa DeLauro (D-CT-03)
14. Representative Pete Stauber (R-MN-08)
15. Representative Paul Tonko (D-NY-20)
16. Representative Brittany Pettersen (D-CO-07)
17. Representative Angie Craig (D-MN-02)
18. Representative Jason Crow (D-CO-06)
19. Representative Joe Neguse (D-CO-02)
20. Representative Mark Pocan (D-WI-02)
21. Representative Ann Wagner (R-MO-02)
22. Representative Deborah Ross (D-NC-02)
23. Representative David Kustoff (R-TN-8)
24. Delegate Eleanor Holmes Norton (D-DC)

The GLOBAL DC Fly-In concluded with a reception highlighting the achievements of the delegation and celebrating future advocacy efforts with dinner and dancing.

Please contact your U.S. Representatives and Senators and urge them to cosponsor the DeOndra Dixon INCLUDE Project Act.

GLOBAL Affiliate, the Crnic Institute for Down Syndrome, has five clinical trials specifically for patients with Down syndrome: Two in Alzheimer’s and Down Syndrome, one in Down Syndrome Regression Disorder, and two in autoimmunity and inflammation.

To read about the impactful research that the INCLUDE Project has funded visit the NIH Down Syndrome Coordinating Center Website.

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 35 states and 11 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 130 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World TM. GLOBAL also organizes the annual AcceptAbility Gala in Washington, DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world.

Visit globaldownsyndrome.org and follow us on social media Facebook, X, Instagram, LinkedIn, and YouTube.

Media Contact:
Anca Elena Call, acall@globaldownsyndrome.org, C: (720) 320-3832

Alex Lee, alee@globaldownsyndrome.org, C: (720) 382-8451

Crnic Institute findings published in Cell Reports highlight understudied abnormal liver function in people with Down syndrome and possible dietary interventions

Researchers at the University of Colorado Anschutz Linda Crnic Institute for Down Syndrome (Crnic Institute) have uncovered compelling evidence that individuals with Down syndrome experience significant alterations in liver metabolism, including elevated levels of bile acids in the bloodstream and other biomarkers of liver dysfunction. The study, published in Cell Reports, suggests that these changes may be modifiable through diet, providing hope for improved health outcomes.

Results Identify Unique Liver Dysfunction in Down Syndrome

The liver is a dynamic and vital organ that removes toxins from blood, produces bile for fat digestion, metabolizes nutrients, and makes proteins for blood clotting, making it essential for detoxification, metabolism and immunity. Using multiomic analysis of plasma samples from more than 400 research participants in the Human Trisome Project, a large cohort study of the population with Down syndrome run by the Crnic Institute, the team identified consistent elevations in bile acids across the lifespan, independent of body mass index (BMI) or co-occurring conditions. Bile acids are molecules made from cholesterol in the liver that are crucial for digesting fats and fat-soluble vitamins in the small intestine, while also acting as signaling molecules that can regulate metabolism and inflammation.

The study also demonstrated that hepatocytes, the most abundant cells in the liver, derived from induced pluripotent stem cells donated by individuals with Down syndrome exhibit intrinsic metabolic dysfunction, including altered bile acid production and abnormally high fat storage. These cellular findings reinforce the systemic observations in research participants and point to a genetic basis for liver abnormalities in Down syndrome.

To better understand the mechanisms underlying liver dysfunction in Down syndrome, Crnic Institute researchers turned to the Dp16 mouse model, which mirrors many genetic features of Down syndrome. These mice exhibited striking abnormalities in the liver, including inflammation, fibrosis, and a ductular reaction, a phenomenon involving bile duct proliferation and remodeling of blood vessels. Metabolomic analysis revealed elevated bile acids like those observed in people with Down syndrome, and gene expression profiling uncovered widespread disruptions in metabolic and inflammatory signaling pathways. Notably, dietary fat intake profoundly influenced these outcomes: mice fed a high-fat diet developed steatosis, a form of liver disease, and exacerbated liver injury, while a low-fat diet mitigated these effects.

“Our data show that Down syndrome profoundly impacts hepatic metabolism,” says Kelly Sullivan, PhD, senior author and associate professor of Pediatrics at the University of Colorado Anschutz. “Importantly, we found that dietary fat intake can exacerbate or ameliorate these effects in the mouse models, suggesting that nutrition could play a key role in managing liver health in this population.”

“The study demonstrates the importance of combining human research studies with cellular and animal models to drive scientific discovery,” says Lauren Dunn, PhD, lead author of the study. “These findings open the door to practical interventions, where something as simple as dietary modification could significantly improve liver and overall health.”

A Healthy Liver is Vital to Living Longer with Down Syndrome

Liver disease affects up to 100 million adults in the U.S., yet its prevalence in Down syndrome has been poorly understood. This research provides comprehensive evidence of liver dysfunction in Down syndrome and underscores the importance of early monitoring and dietary strategies to reduce risk.

“The liver is an incredibly important organ for many biological functions across the lifespan, even mild liver dysfunction can have broad impacts on human health,” says Joaquín Espinosa, PhD, executive director of the Crnic Institute and professor of Pharmacology. “The fact that liver dysfunction had not been well documented in this population until now highlights the value of transformative research funding through the National Institutes of Health INCLUDE Project and the Global Down Syndrome Foundation.”

“GLOBAL is so grateful to our donors and research participants who make this kind of breakthrough research possible,” says Michelle Sie Whitten, president & CEO of the Global Down Syndrome Foundation (GLOBAL).  “Our dedicated scientists understand the importance of a healthy liver and related functions. With additional research in this area, we hope that more detailed information on diet and other treatments will help my 22-year-old daughter and millions of others with Down syndrome to live longer, healthier lives.”

The research team plans to explore clinical interventions, including low-fat diets and lifestyle modifications, to determine their impact on liver health in individuals with Down syndrome.

About the Linda Crnic Institute for Down Syndrome 

The Linda Crnic Institute for Down Syndrome is one of the only academic research centers fully devoted to improving the lives of people with Down syndrome through advanced biomedical research, spanning from basic science to translational and clinical investigations. Founded through the generous support and partnership of the Global Down Syndrome Foundation, the Anna and John J. Sie Foundation, and the University of Colorado, the Crnic Institute supports a thriving Down syndrome research program involving over 50 research teams across four campuses on the Colorado Front Range. To learn more, visit www.crnicinstitute.org or follow us on Facebook, Instagram, X, Bluesky, and LinkedIn @CrnicInstitute. 

About the University of Colorado Anschutz

The University of Colorado Anschutz is a world-class medical destination at the forefront of transformative science, medicine, education and patient care. The campus encompasses the University of Colorado health professional schools, more than 60 centers and institutes and two nationally ranked independent hospitals – UCHealth University of Colorado Hospital and Children’s Hospital Colorado – which see more than two million adult and pediatric patient visits yearly. Innovative, interconnected and highly collaborative, CU Anschutz delivers life-changing treatments, patient care and professional training and conducts world-renowned research fueled by $910 million in annual research funding, including $757 million in sponsored awards and $153 million in philanthropic gifts. 

About Global Down Syndrome Foundation 

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 35 states and 11 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of 130 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World ^TM. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media Facebook, X, Instagram, and LinkedIn.

18th Annual Event Raises $2.6 Million for Groundbreaking Research and Medical Care While Celebrating Diversity, Inclusion and Achievement

You Can Support People with Down Syndrome: Donate Now!

Relive the Magic: Step & Repeat Photos Online | More Photos Coming Soon

Hollywood stars and self-advocates filled the red carpet in a powerful show of support for Global Down Syndrome Foundation (“GLOBAL”). Among the notable attendees were Jessica Biel, Jeremy Renner, Jane Lynch, Kevin Iannucci, Lauren Potter, John C. McGinley, Amanda Booth, Alexis Floyd, Anthony Hill, Niko Terho, Sarah Bock, Max Carver, Shelley Hennig, Beverley Mitchell, Matthew Von Der Ahe, and James Day Keith, all united to champion GLOBAL’s mission to significantly improve the lives of people with Down syndrome through Research, Medical Care, Advocacy & Education.

The night of glamour, gratitude, and inspiration lit up the Sheraton Denver Downtown Hotel as GLOBAL hosted its 18th annual Be Beautiful Be Yourself Fashion Show on Saturday, October 18, 2025. The unforgettable evening attracted over 1,400 guests from across the U.S. and around the world, raising $2.6 million.

Recognized as the largest and most celebrated Down syndrome fundraiser in the world, GLOBAL’s Be Beautiful Be Yourself Fashion Show has raised more than $33 million cumulatively since its inception, transforming research and tangible health outcomes for thousands of children and adults with Down syndrome.

While celebrities provided star power to the event, it was the 21 models who happen to have Down syndrome who truly stole the spotlight, especially GLOBAL’s 2025 Ambassador, Guion Macsovits. A charismatic freshman at Regis University, Guion walked the runway alongside his friend, two-time Academy Award nominee Jeremy Renner, who introduced Guion as “the real superhero.” Guion received a standing ovation from the audience, including 21 proud family members who traveled from Memphis to celebrate his achievements. Their presence brought palpable warmth to the room, embodying the night’s theme of inclusion and empowerment.

Zaya Biel, a GLOBAL Ambassador alum, also graced the runway alongside her godmother and aunt, the award-winning actor and producer Jessica Biel. The full model lineup and video clips from the fashion show will be released later this week.

“We are profoundly grateful to our generous donors and Ambassadors, including Guion, Clarissa, Louie, Zaya, Chase, Tucker, Sam and Sophia, who returned to our Be Beautiful Be Yourself Fashion Show in full force to support GLOBAL,” said Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation. “Our event highlights that people with Down syndrome bring together all walks of life and create an evening of unconditional love, magical inspiration, and tangible progress towards elongating life and improving health outcomes.”

The 2025 Quincy Jones Exceptional Advocacy Awards were presented to five-time Emmy, two-time SAG Award, and Golden Globe Winner Jane Lynch and Champions breakout star Kevin Iannucci. In 2009, iconic music legend Quincy Jones established his namesake award with GLOBAL which quickly became the organization’s highest honor to recognize those who made an impact on the lives of people with Down syndrome. Quincy was a staunch GLOBAL supporter who sadly passed away last year.

“GLOBAL and the Be Beautiful Be Yourself Fashion Show put people with Down syndrome exactly where they belong: in the spotlight. Center stage. Not in the background or on the sidelines, but as the stars,” says Jane Lynch, reflecting on the evening. “GLOBAL is pushing for a world where inclusion isn’t just a nice idea but an everyday reality.”

Kevin Iannucci moved the audience with a heartfelt speech about perseverance and belonging:

“After touring the GLOBAL offices in June, I told my mom it was a dream of mine to receive this award someday,” said Iannucci. “That day, Michelle surprised me with the news that I was the 2025 recipient. I was overwhelmed and started crying — but they were happy tears. I believe this world needs diversity, equity, and inclusion, and we should speak up for those who cannot speak for themselves. People with Down syndrome can do amazing things when given the opportunity. We want to be accepted and included.”

Local 9NEWS anchors Kim Christiansen and Phil Lipof hosted the evening with warmth and humor, guiding guests through an unforgettable program.

Twenty-one extraordinary models who happen to have Down syndrome walked the runway alongside Hollywood’s finest, and devoted community supporters. Among them were Denver Broncos Cheerleaders Brittany and Sophia, whose radiant energy and genuine connection with the models brought even more joy to the stage.

The event was co-chaired by Jay Mills & Kiana Akina and Meg & Andy Kauth, whose dedication and creativity helped deliver one of GLOBAL’s most successful events to date.

Jay Mills and Kiana Akina shared: “Every year, this show proves that love and science together can move mountains. Seeing so many people come together for GLOBAL — to celebrate inclusion, to fund research, and to change lives — has been deeply inspiring. We’re honored to help carry this mission forward.”

Meg and Andy Kauth added, “This cause touches our family deeply. Having two nieces with special needs, we’ve seen firsthand how much progress depends on understanding, compassion, and research. We were so moved that our nieces got to walk in the fashion show. GLOBAL gives families like ours hope, and tonight, that hope was shining on stage.”

The live auction, led by Grant Snyder, featured exclusive experiences and one-of-a-kind items that drove spirited bidding in support of GLOBAL’s mission. Highlights included a chance to walk the red carpet at the upcoming premiere of Jessica Biel’s newest film Matchbox, a bike ride or golf outing with Lance Armstrong, a New Year’s Eve Dinner with Peter Kudla, exclusive experiences with several Denver Broncos players, luxury getaways, and dining opportunities with stars Max Carver, Shelley Hennig, and Beverley Mitchell.

Proceeds from the Be Beautiful Be Yourself Fashion Show directly fund GLOBAL’s world-class affiliates on the Anschutz Medical Campus — the Crnic Institute for Down Syndrome, the Alzheimer’s & Cognition Center, and the Sie Center for Down Syndrome at Children’s Hospital Colorado, as well as the GLOBAL Adult Clinic at Denver Health. Together, these institutions are pioneering transformative research and comprehensive medical care for people with Down syndrome worldwide.

The event’s success reflects the generosity of GLOBAL’s Leadership Circle, Sponsors, Awardees, Models, Ambassadors, Partner Organizations, Celebrities, Self-Advocates ,and Families.

To view photos, videos, or to make a donation, visit bebeautifulbeyourself.org.
For more information about the Global Down Syndrome Foundation, visit globaldownsyndrome.org.

DENVER, COLORADO – OCTOBER 18: Fashion show models onstage at Global Down Syndrome Foundation’s 18th Annual Be Beautiful Be Yourself Fashion Show at Sheraton Downtown Denver Hotel on October 18, 2025 in Denver, Colorado. (Photo by Tom Cooper/Getty Images for Global Down Syndrome Foundation)

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 33 states and 11 countries.

Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 130 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World^TM. GLOBAL also organizes the annual AcceptAbility Gala in Washington, DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media Facebook, Instagram, X, LinkedIn, and YouTube.

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Experience the Magic at the Be Beautiful Be Yourself Fashion Show, the Largest Down Syndrome Fundraiser in the World

You Can Support People with Down Syndrome: Purchase Tickets, Donate or Sponsor a Model!

The Be Beautiful Be Yourself Fashion Show is the largest annual Down syndrome fundraiser in the world, attracting over 1,400 attendees and having raised a cumulative $31 million for life-saving research and medical care. Proceeds go to the Global Down Syndrome Foundation (GLOBAL), supporting 400 scientists and medical professionals serving thousands of children and adults with Down syndrome from the U.S. and around the world. Each year, the event recognizes a GLOBAL Ambassador, two Quincy Jones Exceptional Advocacy Awardees, and the Event Co-Chairs. The event finale is an ovation-worthy fashion show featuring beautiful models who happen to have Down syndrome and A-list celebrities. A sumptuous three-course meal, and one-of-a-kind live and silent auction items are also part of the evening many describe as “magical.”

WHEN & WHERE

Saturday, October 18, 2025

5:00 PM – Receptions/Silent Auction; 5:30 PM – Red Carpet; 7:00 PM – Dinner/Live Auction/Honorees & Awards; 8:30 PM – Fashion Show; 9:30 PM After Party

Sheraton Denver Downtown Hotel, 1550 Court Place, Denver, CO 80202

WHO

Jessica Biel – Jessica Biel is an Emmy-nominated actor and producer known for her acclaimed roles in The Sinner, Limetown, The Illusionist, Candy, The Better Sister, and dozens of other feature films and series. Jessica is proud to support GLOBAL’s research and medical care, which has had a positive impact on her niece, Zaya, who happens to have Down syndrome. Zaya is a GLOBAL Ambassador whose parents are also deeply involved with GLOBAL and the Sie Center for Down Syndrome at Children’s Hospital Colorado. Jessica will walk the runway with Ambassador Zaya at this year’s event.

Jeremy Renner – Jeremy Renner is a two-time Academy Award nominee and is one of Hollywood’s most versatile and respected actors. Beyond his critically acclaimed roles in films such as The Hurt Locker and The Town, Jeremy is known for playing Hawkeye in the Marvel Cinematic Universe Avengers films and for his role in the Mission Impossible franchise.  After attending the fashion show in 2019, Jeremy formed a bond with GLOBAL Ambassador Guion Macsovits with whom he will walk the runway at this year’s event.

Jane Lynch – recipient of GLOBAL’s most prestigious honor, the 2025 Quincy Jones Exceptional Advocacy Award.

Kevin Iannucci – recipient of GLOBAL’s most prestigious honor, the 2025 Quincy Jones Exceptional Advocacy Award.

Guion Macsovits – 2025 GLOBAL Ambassador

Lauren Potter – Actor, Glee

John C. McGinley – Award-winning Actor, Quincy Jones Exceptional Advocacy awardee & GLOBAL Board Member

Amanda Booth – Model, Actor, Quincy Jones Exceptional Advocacy awardee, Advocate

Shelley Hennig – Actor, Teen Wolf

Max Carver – Actor, Teen Wolf

Alexis Floyd – Actor, Inventing Anna & Grey’s Anatomy

Anthony Hill – Actor, Grey’s Anatomy

Niko Terho – Actor, Grey’s Anatomy

Matthew Von Der Ahe – Actor, Champions

James Day Keith – Actor, Champions

Sarah Bock – Actor, Severance

Beverley Mitchell – Actor, 7th Heaven

Kim Christiansen – 9NEWS Anchor

Phil Lipof – 9NEWS Anchor

Michelle Sie Whitten – President & CEO, Global Down Syndrome Foundation

Dr. Joaquín Espinosa – Executive Director, Crnic Institute for Down Syndrome, University of Colorado Anschutz Medical Campus, University of Colorado Boulder

Dr. Nicole Bauman – Director, Sie Center for Down Syndrome, Children’s Hospital Colorado

Jay Mills & Kiana Akina and Andy & Meg Kauth, Event Co-Chairs

WHY

Down syndrome is the leading cause of developmental delay in the world, affecting an estimated 400,000+ Americans and millions worldwide. Yet it has been one of the least funded genetic conditions by our federal government. GLOBAL is the largest U.S. non-profit working to save lives and dramatically improve health outcomes for people with Down syndrome through Research, Medical Care, Education & Advocacy.

GLOBAL’s annual Be Beautiful Be Yourself Fashion Show is the largest annual Down syndrome fundraiser in the world, raising critical funds for government advocacy, breakthrough research, life-saving medical care and more. The event brings together 1,400 attendees, representing multiple stakeholders in the Down syndrome community, to celebrate major new federal research funding increases, impactful science at the Crnic Institute for Down Syndrome and at the Alzheimer’s & Cognition Center, as well as transformative care at the Sie Center for Down Syndrome and the GLOBAL Adult Clinic.

The event allows GLOBAL to truly deliver on its mission of elongating life and dramatically improving health outcomes for children and adults with Down syndrome.

HOW TO SUPPORT

Tickets and Table Sponsorships,  can be purchased online in addition to Model Sponsorships & Donations.  Volunteer applications will continue to be processed until October 10, 2025.

To cover the event or receive photos and/or videos, contact Trisha Davis- trishdavis0707@gmail.com at (818) 640-9259 OR Anca Elena Call – acall@globaldownsyndrome.org at (720) 320-3832.

For more information, visit www.bebeautifulbeyourself.org and www.globaldownsyndrome.org.

New study in Nature Communications highlights need for personalized medicine tailored to different life stages in individuals with Down syndrome

AURORA, Colo. (Sept. 25, 2025) – In a groundbreaking new study published in Nature Communications, researchers from the Linda Crnic Institute for Down Syndrome (Crnic Institute) at the University of Colorado Anschutz discovered important differences in the physiological changes observed in over 300 individuals with Down syndrome across the lifespan.

The study is part of the ongoing Human Trisome Project, a large, detailed cohort study of people with Down syndrome, including deep annotation of clinical data, multi-omics datasets, and the largest biobank for the study of this condition to date.

The Crnic Institute team analyzed hundreds of blood samples to identify physiological differences between research participants with Down syndrome versus control participants without Down syndrome at different life stages. They observed that triplication of chromosome 21, or trisomy 21, the genetic condition that causes Down syndrome, leads to age-specific effects during childhood, adolescence, and various stages of adult life. They identified key biological processes that are consistently dysregulated at all ages as well as those that are dysregulated only during specific age ranges.

“These results reveal for the first time that trisomy 21 changes human biology in unique ways as persons with Down syndrome grow and age,” said Joaquín Espinosa, PhD, executive director of the Crnic Institute, professor of pharmacology, principal investigator of the Human Trisome Project, and one of the senior authors of the paper. “Whereas some effects of the extra chromosome are observed throughout life, such as immune hyperactivity and dysregulated oxygen metabolism, other effects occur only in children or only in adults.”

“The magnitude of these age-specific changes is remarkable,” explained Neetha Paul Eduthan, MS, one of the lead authors of the paper. “When examining the genes, proteins, metabolites, and immune cell types affected by trisomy 21 in children versus adults, the changes that are unique to one age group always outnumber those that are conserved across the lifespan.”

To put these observations into perspective, the team also analyzed the temporal effects of the sex chromosomes, or sex karyotype, defined as XX for females and XY for males.

“This analysis revealed the profound impacts of puberty on human biology,” explained Micah Donovan, PhD, instructor of pharmacology and co-lead author of the study. “The molecular differences between young boys and girls are negligible in the first decade of life, but with the onset of puberty and gonad activation, vast biological changes are observed across the sexes, including important differences in gene expression, metabolism, and immune function.”

The study team also employed advanced computational approaches to elucidate how human biology changes from early childhood to late adult life, and how these temporal changes are affected by trisomy 21.

“We identified eight major temporal trajectories for gene expression, protein levels, metabolite levels, and immune cell frequencies in the bloodstream,” said Matthew Galbraith, PhD, associate research professor of pharmacology, director of the Data Sciences Program at the Crnic Institute, and one of the senior authors of the paper. “Biological aging is not a linear process, and our analyses provide an unprecedented view of the developmental trajectories of more than 20,000 biological data points from 6-month-old babies to sexagenarians.”

The Crnic Institute study team has already embarked on several follow-up studies, including new investigations of impaired musculoskeletal growth and accelerated immune aging characteristic of Down syndrome.

“This is another important breakthrough from our scientists at the Crnic Institute that we hope will lead to more personalized medicine and effective treatments for people with Down syndrome at different ages,” said Michelle Sie Whitten, president & CEO of Global Down Syndrome Foundation (GLOBAL), a partner and an affiliate organization of the Crnic Institute. “As a mother of a brilliant 22-year-old with Down syndrome, I am eager to understand how this new knowledge may elongate life and improve the health of millions of people with Down syndrome across the world. We are proud that GLOBAL’s advocacy work with Congress and with the National Institutes of Health (NIH) has led to the establishment of the trans-NIH Down syndrome funding initiative, the INCLUDE Project, that underwrites this and numerous other groundbreaking studies and clinical trials.”

About the Linda Crnic Institute for Down Syndrome

The Linda Crnic Institute for Down Syndrome is one of the only academic research centers fully devoted to improving the lives of people with Down syndrome through advanced biomedical research, spanning from basic science to translational and clinical investigations. Founded through the generous support and partnership of the Global Down Syndrome Foundation, the Anna and John J. Sie Foundation, and the University of Colorado, the Crnic Institute supports a thriving Down syndrome research program involving over 50 research teams across four campuses on the Colorado Front Range. To learn more, visit www.crnicinstitute.org or follow us on Facebook, Instagram, X, Bluesky, and LinkedIn @CrnicInstitute.

About the University of Colorado Anschutz

The University of Colorado Anschutz is a world-class medical destination at the forefront of transformative science, medicine, education and patient care. The campus encompasses the University of Colorado health professional schools, more than 60 centers and institutes and two nationally ranked independent hospitals – UCHealth University of Colorado Hospital and Children’s Hospital Colorado – which see more than two million adult and pediatric patient visits yearly. Innovative, interconnected and highly collaborative, CU Anschutz delivers life-changing treatments, patient care and professional training and conducts world-renowned research fueled by $910 million in annual research funding, including $757 million in sponsored awards and $153 million in philanthropic gifts.

About Global Down Syndrome Foundation 

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,500 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World TM. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media Facebook, X and Instagram.

This year’s GLOBAL Education Awards will fund 14 programs—from Alzheimer’s education initiatives to fitness classes for people with Down syndrome.

Denver – August 29, 2025 – Global Down Syndrome Foundation (GLOBAL) is pleased to announce that 14 Down syndrome organizations in the United States and beyond have been selected to receive GLOBAL Education Awards. The 2025 awards bring GLOBAL’s investment in local medical, healthcare, and research funding to nearly $1.3 million since the program’s inception. GLOBAL has given out a total of 359 Education, Employment and Emergency Relief Awards supporting approximately 25,000 individuals with Down syndrome, families and professionals.

“GLOBAL believes in the power and heart our Organization Members bring to their communities each and every day,” says Michelle Sie Whitten, President & CEO of GLOBAL. “Our goal with these awards is to empower meaningful change for the families they serve.”
David Tolleson, Vice President, Strategic Alliances, concurs. “It is such an honor to work alongside so many friends in our community who support GLOBAL’s mission to improve health outcomes for our friends and family members with Down syndrome.”
This year’s recipients are in California, Delaware, Florida, Indiana, Nebraska, New Mexico, North Carolina, Tennessee, Texas, Mexico, and Uganda.

Mildred Katusabe, founder of Rowan’s Down Syndrome Centre, expressed her gratitude, noting, “We will ensure that it will make a big impact on the situation of people with Down syndrome in Uganda!”

“Support for our adults is definitely an area that has many gaps,” says Anne Dichele, Executive Director of Gold Coast Down Syndrome Organization in Boca Raton, Florida. “With GLOBAL’s Award we can equip families with information and strategies around Alzheimer’s in Individuals with Down Syndrome which unfortunately is something our adults are highly predisposed to. With evidence-based guidelines and this GLOBAL award we can begin to make a tangible difference.”

The 2025 GLOBAL Education Award recipients and their funded programs are as follows:

Adult Disability Medical Healthcare (Atlanta, GA): Self-Advocacy for Healthcare Training in Teens and Adults with Down Syndrome and their Family Members/Caregivers will present educational webinars on life skill topics for ADMH patients to encourage greater understanding and compliance with their treatment plans.

Black Down Syndrome Association (Fortville, IN): Funds will help support the first BDSA Family Reunion Conference a 3-day event created to provide education, connection, and celebration for Black families of individuals with Down syndrome.

Down Syndrome Alliance of the Midlands (Omaha, NE): The Cognitive Collective is designed to enhance cognitive skills – memory, attention, engagement, speed, and accuracy through 3 programs – “Dancing Beyond Limits”, “Drumming for Wellness”, and “All Abilities Gaming.”

Down Syndrome Association of Central Texas (Austin, TX): Pathway to Care Packages will equip healthcare professionals with the tools, resources, and training required to deliver an informed and accurate Down syndrome diagnosis. Information will also be provided to new parents.

Down Syndrome Association of Delaware (Newark, DE): Power to Marc is a live webinar and e-learning course to introduce the tools and process steps so that people with disabilities can participate in their own care without the use of restraints or sedation.

Down Syndrome Association of Memphis & the Mid-South (Cordova, TN): The Down to Move Wellness Series – Water Wise & Taekwondo program will offer weekly adaptive swim lessons and taekwondo for families to encourage physical movement, self-discipline, and emotional well-being.

Down Syndrome Connection of the Bay Area (Danville, CA): Funds will support the Empowering Every Stage: Medical and Life Planning for Individuals with Down Syndrome conference for parents/caregivers, medical and mental health providers, and adults with Down syndrome.

Down Syndrome Foundation Uganda (Kampala, Uganda): The Down Syndrome Clinical Excellence Training program will enhance healthcare provided at birth and before discharge from the hospital.

GiGi’s Playhouse – Orange County (Laguna Hills, CA): GiGiFit is a 15-week, evidence-based fitness program for self-advocates which combines physical therapy principles with group fitness classes to build strength, improve endurance, and promote wellness. The program also includes education on nutrition to promote healthy meal planning.

Gold Coast Down Syndrome Organization (Boca Raton, FL): The Understanding Alzheimer’s in Individuals with Down Syndrome through Knowledge, Action, and Hope conference will equip families with information and strategies they need as their loved one with Down syndrome ages.

North Carolina Down Syndrome Alliance (Raleigh, NC): The Medical Outreach/UNC Clinic program will provide support education on best practices, the GLOBAL Medical Care Guidelines for Adults with Down Syndrome, delivering a diagnosis, and more.

Rio Grande Down Syndrome Network (Albuquerque, NM): The Partners in Care: Down Syndrome Medical Education Initiative will work with local hospitals and medical schools to provide up-to-date, evidence-based training to medical professionals to increase knowledge, skills, and sensitivity among providers working with individuals with Down syndrome.

Red Down México (Puerto Morelos, Mexico): Clinica T21 en línea – Circuito de Atención Integral 2025 is a telehealth initiative to deliver comprehensive medical, psychological, and educational care across Mexico.

Rowan’s Down Syndrome Awareness Centre (Hoima, Uganda): Research and Development of a Delivery System for Medical/Therapy Support for People with Down syndrome in Uganda will develop systems to support research information, participation, and access for healthcare professionals and individuals with Down syndrome.

To learn more about the GLOBAL Membership Awards, visit https://www.globaldownsyndrome.org/global-awards/.
To learn more about individual and organization GLOBAL memberships, visit https://www.globaldownsyndrome.org/global-membership/.
To learn more about Global Down Syndrome Foundation, visit https://www.globaldownsyndrome.org/.

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About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 120 Down syndrome organizations worldwide and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World™. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media – Facebook, X, Instagram, and LinkedIn.

GLOBAL’s Award-winning Be Beautiful Be Yourself Fashion Show will honor GLOBAL Ambassador Guion Macsovits and Quincy Jones Exceptional Advocacy Awardee Kevin Iannucci

DENVER – July 24, 2025 – Today, Global Down Syndrome Foundation (GLOBAL) announced two-time Academy Award nominee Jeremy Renner and a fantastic celebrity lineup for its annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world.

“I’m honored to be invited back to GLOBAL’s amazing event and to hang out with some of the coolest people who happen to have Down syndrome,” says Jeremy. “I’m excited to give back in a meaningful way, to help raise funds for research that will lead to healthier, longer lives. It’s going to be a great night, and I hope we can break some records!”

“We are thrilled to have Jeremy Renner, Ambassador Guion Macsovits, and Quincy Jones Awardee Kevin Iannucci join our GLOBAL family,” says GLOBAL President & CEO, Michelle Sie Whitten. “Our Down syndrome community is so grateful that Jeremy is fully recovered, and we are excited to provide his New York Times bestseller, My Next Breath, as a gift for attendees. Guion and Kevin are both brilliant and beautiful role models who are helping us break stereotypes and showing the world that if society gives us a chance, people with Down syndrome can reach their goals and live their dreams. But we have to have good health and a long life to succeed, and that’s where we come in.”

The event will honor Jeremy’s friend, GLOBAL Ambassador Guion Macsovits, and Quincy Jones Exceptional Advocacy Awardee, Champions actor Kevin Iannucci. They will join award-winning film and TV actor John C. McGinley; beloved actress from the longest primetime TV drama on ABC, “Grey’s Anatomy” Caterina Scorsone; model and actress Amanda Booth; and award-winning local NBC anchor Kim Christiansen, who will emcee the event. In its 17^th year, the award-winning event will be held on Saturday, October 18 at the Sheraton Denver Downtown Hotel. Proceeds will benefit GLOBAL’s life-saving and transformative research and medical care.

“I’m excited to have one of my favorite superheroes, Jeremy Renner, back at the fashion show,” says Ambassador Guion Macsovits. “I went to his house and to an Avengers movie premiere. He told me I was a ‘real superhero.’ It was one of the best nights of my life.”

Guion Macsovits is a fun-loving 18-year-old with a heart as big as his smile. He recently graduated from Cherry Creek High School where he was known for his kindness, thoughtfulness, and the way he naturally makes people feel valued. Whether holding the door between bells, checking in on a friend, or offering a word of encouragement, Guion has a way of making the world a little brighter. His emotional intelligence is off the charts, and he leads with empathy in everything he does. Ambassador Guion and his family will work closely with GLOBAL to make sure it raises both funds and awareness towards elongating life and improving health outcomes for children and adults with Down syndrome.

“I am so grateful to the Global Down Syndrome Foundation for giving me this important award,” says Kevin. “It is even more meaningful as we lost the iconic Quincy Jones last year. I hope that all my Champions friends and castmates are going to join us for this amazing event that is helping to save lives through research and medical care. Can’t wait to raise some funds and hit the runway!”

Kevin Iannucci was born and raised in Raleigh, North Carolina. He has quickly distinguished himself as one of today’s most sought-after young talents with Down syndrome, with an impressive body of work that has earned him a reputation as a favorite among prestigious directors. He will receive GLOBAL’s highest honor – the Quincy Jones Exceptional Advocacy Award. Past recipients include Jamie Foxx, DeOndra Dixon, Woody Harrelson, Sofia Sanchez, Bobby Farrelly, Madison Tevlin, Caterina Scorsone, Eric Dane, Jamie Brewer, Colin Farrell, Tim Harris, John Lynch, Zack Gottsagen, John C. McGinley, Karen Gaffney, Eva Longoria, Frank Stephens, Kyra Phillips, Marián Ávila, and Beverly Johnson.

GLOBAL’s advocacy and lobbying efforts with Congress and outreach to the National Institutes of Health (NIH) have resulted in an unprecedented increase of the national Down syndrome research budget, from $27 million in 2016 to over $140 million in 2024.

Proceeds from the Be Beautiful Be Yourself Fashion Show support the important work of GLOBAL and GLOBAL’s affiliates, including a team of over 400 scientists working on breakthrough life-saving research at the Linda Crnic Institute for Down Syndrome and the CU Alzheimer’s & Cognition Center, and a dream team of medical professionals providing excellent medical care to over 2,500 patients from 33 states and 10 countries at the Anna and John J. Sie Center at Children’s Hospital Colorado.

To learn more, visit: https://bebeautifulbeyourself.org/ and follow us on social media for updates: Facebook, X, Instagram, and LinkedIn.

To sponsor a table or buy tickets, visit: https://bebeautifulbeyourself.org/be-beautiful-be-yourself-fashion-show-tables/ orhttps://bebeautifulbeyourself.org/be-beautiful-be-yourself-fashion-show-tickets/.

For celebrity interviews, additional information, imagery, or to cover the Be Beautiful Be Yourself Fashion Show, please contact trishdavis0707@gmail.com, For more information on the Global Down Syndrome Foundation, please visit www.globaldownsyndrome.org.